Our journey with Texas Children’s began when our youngest daughter was just two days old. I found Caroline unresponsive and turning blue in her bassinet and began CPR on our kitchen floor. When the ambulance arrived, I immediately said, “She needs to be taken to Texas Children’s Hospital” — and thus began new lives for me and my husband, Anthony, and for our other daughters.
Caroline had seizures for the first three months of her life. She did not meet any of her developmental milestones, but we had a reprieve from the seizures until she turned three. When the seizures returned, though, we were told that her condition was severe and untreatable — catastrophic epilepsy, they called it.
At four years old, Caroline suffered a stroke, which paralyzed her on her right side and affected even her swallowing function. Even so, after a little while, Caroline began to come out of her extreme illness, learning to walk for the first time in her life and learning to swallow again. We began to believe that we just might beat the odds.
Caroline was always a fighter, and she was determined to get well. She was asked several times to donate samples of her blood for genetic testing. We always gave Caroline the opportunity to say yes or no to the blood draws. She always said yes — and she would grin, because she knew she was helping others.
The seizures continued and always seemed to happen at the worst times, like when she was getting ready for a Special Olympics swim meet. She participated in several different clinical trials — we tried everything we could to bring her relief. When we heard that Dr. Huda Zoghbi was going to be the director of the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital, we immediately wanted to learn more. Anthony and I felt strongly that if a cure for catastrophic epilepsy were to be found, it was going to be at the NRI.
When she was 11, Caroline lost her ability to walk. About this time, we began hearing about genomic testing, which ultimately found the culprit for Caroline’s condition in the STXBP1 gene. We finally had a mission for our donation to the NRI — finding a cure for catastrophic epilepsies, beginning with STXBP1.
“Caroline was always a fighter, and she was determined to get well.”
Dr. Zoghbi had a researcher in mind, Dr. Mingshan Xue, and she was trying to convince him to come to Houston. She decided to introduce him to Caroline. They immediately hit it off. During that visit, Caroline began having a series of very bad seizures — and Drs. Xue and Zoghbi saw firsthand what she was dealing with. As they left our home that day, Mingshan whispered to me: “99 percent sure I’ll be back here in Houston.” Mingshan did come, and he developed a mouse model for STXBP1 — and the mice seized exactly as Caroline did.
The NRI is at the forefront of efforts to solve the myriad neurological issues affecting children. We believe it’s going to happen not in the far-flung future, but in the near future.
In March of 2016, our beautiful Caroline passed away in my arms. Thanks to Texas Children’s, she lived 18 years, far surpassing her expected life span. She was the bravest, strongest, silliest, most amazing person I will ever know.
During the worst year of our lives, Anthony and I became even more committed than ever to helping solve the riddle of catastrophic epilepsy. In Caroline’s memory, we will solve it, and we will solve it at the NRI — of that I am sure